A Quarter Turn

No one picks up a penny, few will stop for a dime, but everyone picks up a quarter because it still has value.

A fourth, as they say in the liquor business is 3/4 less than a whole. A quarter of a pizza is like Pac Man if he opened his mouth twice as wide. For those of you not so good with math, help has arrived. President Ford signed The Metric Conversion Act in 1975, and the United States should be 100% switched over soon. I wonder if we will continue picking up metric quarters?

Most motorcycles are equipped with a right handgrip that twists counter-clockwise from idle to wide open throttle in a quarter turn. As my journey of a million miles for Multiple Sclerosis has now crossed over the quarter million milestone, my mission is indeed at wide open throttle and I am certainly turning the first big corner of my incredible journey.

Originally calling my ride the Endless Road Tour, it has now morphed into Chasing the Cure because after riding the first quarter of a million miles, I believe not only will I reach my destination, but that we will also discover a cure along the way.

250,000 miles is an incredible achievement for me considering my adventure began with just a crazy idea five years ago. Starting at zero, I wanted to document riding a motorcycle a million miles raising awareness and money for Multiple Sclerosis. I wanted to ride everywhere, reaching out to others, encouraging them to live the best life they could, all while Chasing the Cure. Like MS itself, I really didn’t know the route this idea would take or where I would end up.

Multiple Sclerosis is an autoimmune disease causing inflammation of the central nervous system. Damage to the coating surrounding the nerves in the brain and spinal cord interfere with the transmission of signals to the rest of the body causing a wide range of symptoms.

The disease targets more women than men, and is usually diagnosed between the ages of twenty and forty. It affects every person differently and there is no typical course of disease progression, symptoms and severity will differ for each person. Common symptoms can include fatigue, walking difficulties, numbness, spasticity, weakness, vision problems, bladder and bowel problems, pain, cognitive issues, depression and emotional changes.

Today we have a drawer full of medications for the relapsing forms of MS that help slow down the amount of attacks and disease progression, but we do not have a way to reverse the damage that has occurred, and we do not have a cure. There is a lot of exciting research being conducted however, and I believe a cure may happen over the next decade. This year, for the first time ever, a medication was approved for primary progressive MS, which is a less common, but more severe disabling form of the disease. We need the research to continue and to speed up the process of getting medications approved to stop the irreparable damage and ultimately find a cure.

For the past five years I have raised money for the National MS Society exclusively, and I have recently made a decision to expand the organizations that my fundraising efforts will support. There are many deserving programs that do incredible work and are aligned with my goals.
One of the organizations that I will be joining forces with is Race to Erase MS. This foundation funds a coalition of the top MS research centers across the United States including Cedars-Sinai, Harvard, John Hopkins, Yale and others. I believe The Center Without Walls research centers are on a highway to a cure.

Personally, I am lucky that my MS has been in check, no doubt because of the disease modifying therapy I have been taking for 12 years and lifestyle changes I have made. Following my passion of riding every day certainly has played a part in my treatment. A mile a day keeps the doctor away.

In five years, I talked my way into becoming a national speaker for two separate pharmaceutical companies, a writer and ambassador for MS and motorcycle touring; sharing my adventure to over 250 audiences across the United States. My story and my journey have brought awareness to the disease and I really feel like I am making a difference in the lives of people living with chronic illnesses. I am continually amazed to hear how my story is helping others find or recalculate their own road. Helping others is the fuel that keeps my mission going forward.

Unfortunately, many people who have Multiple Sclerosis are not doing so well. Every moment of their day is filled with pain, weakness, failing body parts, depression, anger and worst of all, lost hope. I ride every day for these people, knowing I have to do much more. There are so many other people I need to help, so many more miles to ride and ways to raise money to research finding a cure.

I travel exclusively by motorcycle and although I have yet to obtain a fiscal sponsor, my journey has received thousands of dollars in products and services from many companies who see value in supporting what I am doing. I have accidentally become a product tester for lots of gear and accessories. After all, a month on my bike equals more than a year for most riders!

This journey is possible through continued help from Yamaha, Bridgestone, Twisted Throttle, Aerostich, National Powersports, Spectro Oils and so many others. If you have a chance to patronize these great companies or to even send them a thank you for supporting me, I do appreciate it.

I am also amazed that with your help and support and a few of my crazy ideas we have raised over $100,000 for MS research. My first fundraiser, the 100 Saddles-Sore 1000 not only raised $6,000, but set a world record in the process. Surprisingly, no one had attempted to ride 1000 miles in 24 hours using 100 different motorcycles before!

The MS5000 was a fundraiser I created to have other riders join me in April each year, trying to document as many miles over 50 days while collecting money for MS. This event raised $85,000 over the last five years. My riding a scooter from Boston to Chicago in 24 hours while wearing a powder blue tuxedo raised some eyebrows and $6000!

The last big ride I attempted was to set a world record documenting the most hours ridden in a single day. 28 hours, across all the US time zones all on the same day raised $7,000 and became the final ride with my first trusty Yamaha.

Speaking of which, at 172,000 miles my retired faithful stallion is now on permanent display at Barber Vintage Motorsports Museum as a testament to the bike’s durability, the most hours ridden in a day world record and other amazing feats I accomplished while riding the hell out of it over three and a half short years.

CURE CHASER was put on display a week ago and can be viewed at the world’s largest motorcycle museum in Birmingham Alabama. I can’t wait to see the amount of national exposure it will bring to my story. The bike is being displayed exactly as I rode it, with all my custom accessories. Yes, this motorcycle will continue it’s never been washed status for all of eternity.

I also had the priviledge to sit on a panel at the United Nations last month as part of the Convention for the Rights of Persons with Disabilities and had the opportunity to share my thoughts about bias towards people with hidden symptoms like those found in chronic diseases like MS.

MotoMedicine is now officially registered as a trademark with the US Patent Office. I use this term to raise awareness of the healing powers and healthy benefits of riding motorcycles. Chasing the Cure exposure can be found in the September issue of Motorcyclist Magazine.

If you are in Hungary, you can read about my journey in the latest issue of MotZin magazine.

You can also visit me and my current bike on display at the Yamaha booth at AIMEXPO in Columbus this fall as well as at the International Motorcycle Shows across the country throughout the winter.

Of course, I will be riding to these events!

With my MS in check and a quarter miles digested, a million mile goal does not seem so far away. As I write this post, I’m working on a joint promotional event that may indeed bring my adventure and mission to a whole new level of exposure this winter.

I also have some ideas for an exciting and crazy fundraising stunt with a hard-tail chopper, so stay tuned!

My Facebook fan page is gaining viewers and I will continue to share my popular video posts as I continue to travel the highways and byways of this country.

For those of you not seeing my daily updates or videos on Facebook, the videos are also available on my YouTube channel. Thank you for liking, sharing and following my adventure, as every click helps me gain exposure and ultimately the fiscal sponsors I will need to propel me the next three quarters of my journey, Chasing the Cure.

Regrets?
Only one. If I had only pledged a million metric miles, I would now be 402,336 Kilometers, 2/5ths or 40% of the way to a cure!

Magic Carpet Ride

As I stood watching the celebrities parade down the famous carpet, I thought it might be fun to pretend I was one of them, and after repeated rejections, I finally found a willing accomplice to escort through all the flashing bulbs and microphone pokes of the infamous Hollywood paparazzi.

“Do you want to walk the carpet?” I asked.

“Oh, I’m not a celebrity, I’m here because I have MS,” replied my brand new friend Caroline.

Star –Lite. Sneaking a walk on the carpet with another MS advocate and blogger Caroline Craven www.girlwithms.com

I will never be a Hollywood celebrity, but by being invited to attend the 24th Race to Erase MS Gala at the Beverly Hills Hilton, I sure felt like one. Making the decision to head out to the west coast for this event was not an easy one for me. Eight days away from home and 6500 miles on the road was going to be expensive, especially considering this was not an event I was being paid to speak at. After leaving the day job in October last year, requests for me to speak have unexpectedly slowed down and I have struggled with finding new opportunities to cover my expenses on the road. Chasing the Cure for Multiple Sclerosis without a fiscal sponsor has been pretty tough on the pocketbook.

I decided to take the chance however, draining my savings further with the hope of meeting people who could help propel my story and mission to cure MS with some additional national exposure. I also wanted to meet the founder and fellow MS advocate Nancy Davis to chat about the possibilities of working together on fundraising in the near future. Nancy Davis has raised over 36 million dollars for her Center Without Walls, a collaborative of top MS centers across the country. This year’s Gala brought out Hollywood’s A-list and raised 1.6 Million dollars which will go directly to these researchers who will discover a cure.

I finally made the decision to attend just two days before needing to leave New England for the long three day trip to California. The first crisis I never thought I would ever face was finding something to wear to this fancy celebrity party. One glance in my closet had me realizing I had no clue what all the cool kids were wearing. Thanks to my ability to FaceTime from the mall and my daughter Ayla paying attention to fashion and entertainment, I was able to find some digs that would be acceptable to wear to Beverly Hills.

I carefully rolled my formal wear and packed it gingerly into the Yamaha’s left saddlebag.

I then prayed it would unpack some 3000 miles and 45 road hours later with limited creases! National Powersports mounted a set of new tires on my rims and I changed my engine’s oil. I left two hours before the sun raised it’s eyebrows and I headed west for my very first star-oozing event.

I was pumped for this trip! I rode from New Hampshire to Joliet, Illinois where I purposefully booked a room at the Hollywood Casino Hotel so I could tease my FaceBook followers that I had arrived in California on the first day. No one fell for it! I wonder if anyone else attending the event drove through Canada to get to there.

Another early morning departure and a long day’s ride to reach Vail Colorado. As exhausted as I was, I should have planned to go further because when I woke up six hours later it was below freezing as I heading through the mountains.

From 20 degrees to 107 through the desert, day three was quite a roller coaster, but it eventually brought me to Los Angeles.

I spent a night visiting with my good friend Kevin Nixon, the motorcycle marketing genius who lives in Long Beach. We talked bikes and marketing strategies. It’s great having friends on both coasts who let me crash at their homes!

Having spoken to hundreds of groups of people living with Multiple Sclerosis, from bikers to corporate executives, it was odd that I was actually nervous about attending a party where my only job was to mingle and not get salad dressing on my new tie.

I arrived at the Beverly Hilton early, saw the crew setting up the red carpet, wellactually orange for MS, registered and went directly to my room. I needed to check on the contents of my saddlebag, the fancy suit I had purchased on clearance at Macy’s. The jacket and pants survived. The shirt was ruffled more than I imagined possible, but I figured If I got the front to look decent and never took off my jacket, no one would ever know, well nobody until now.

I really had no clue how these fancy shindigs worked. I ventured out to the lobby about an hour before the first part of the evening, the silent auction began. I shot a couple of pictures with the big ticket item, a DB11 Coupe donated by Aston Martin of Beverly Hills. The car was later auctioned live during dinner and fetched $290,000!

The stars began to arrive as a 20 member Mariachi band played by the water fountain outside the foyer. The 50 or 60 reporters from the international media were already signed in and had staked claims along the front edge of the carpet, apparently lined up according to their Nielsen ratings.

I got my invisible wrist stamp and headed over to where everyone else was watching the carpet parade. A group of fans had been gathering and ropes were being tightened to keep the spectators away from the guests. I couldn’t help but notice all the big burley men with single-sided hearing aids standing around. I felt safe.

It was a special night at the Beverly Hilton, hundreds of celebrities were joining forces and emptying their wallets to fund research to find a cure for Multiple Sclerosis. They all waited patiently in line to get their pictures taken and be interviewed. They knew the routine. The pictures would be circulated with half truths and gossip for a week or so, bringing international attention to the celebrity but also the fundraiser. There seemed to be a lot of urgency to interview the cast from Dancing With The Stars, as most of them seemed to be in attendance. Some of them loved the media fuss, and some of them did not. I suppose that’s show business!

I felt pretty special, knowing these famous people cared about me and others, took time out of their busy lives to help find a way to stop our disease from progressing. I shared my story with David Osmond, who along with his father Alan Osmond, had been diagnosed with MS. David is an advocate with an amazing positive attitude as well as a gifted voice, carrying forward the great Osmond legacy. He seemed interested in my million mile journey and promised to check out my website.

THIS is what a $1000.00 plate looks like!

Three glasses of priceless Cabernet Sauvignon later, in the ballroom where the Golden Globes are held each year, I found my table and sat down. We watched a moving tribute to this year’s honored guest, actress Jamie-Lynn Sigler who brought her fight with MS to the public eye last year. Grammy award winning Siedah Garett sang, Man in The Mirror, the song she wrote for Michael Jackson and a new single, Carry On, which she wrote for for this event. Siedah Garett also announced for the first time that she too had been diagnosed with Multiple Sclerosis; a disease that strikes regardless of age, race or economic class.

The iconic band Chicago delivered an amazing set and in a Copperfield flash, my Cinderella night was over. The stars were whisked away in their Bentleys and Rolls, probably to some plush after-party way above the clearance accessof my hand stamp.

It was amazing and exciting, and an honor to be invited. I hope next year I will be able to participate more as an advocate and join forces with the Race to Erase MS organization because we clearly are on the same road, racing and Chasing the Cure.

Although meeting Quincy Jones, David Osmond, Robert Herjavec, Randy Jackson, Paris Hilton, Cathy Griffin and Nancy Davis was pretty exciting, it was the Access Hollywood interview on that magic carpet ride that had me grinning every inch of the entire three thousand mile ride home.

For the last 75 years, while most of the country transitions into Spring by swapping out the snow shovels for garden hoes, a bazillion bikers from all over the country migrate to Daytona Beach for Bike Week.

For some, it’s a ritual that starts by giving up shaving for a week or two, dusting off the leather patched vests and polishing up the bikes before loading them onto trailers for the pilgrimage; even if it’s just an hour away.

I understand not everyone rides their motorcycle like I do, I honestly do, but there was a time when out of state folks would at least pretend to ride to Daytona by parking their trailers in an empty lot a couple hundred miles north and try to hit every puddle on the ride into town to at least appear that they were riders. As I sit here in the hotel lobby typing this, I count forty trailers in the lot, twice the number of bikes! While wondering if the 18” of snow that fell at my house yesterday would be cleared by the time I rolled back into my driveway, I get to listen to three men discussing the tricks and techniques for backing up a trailer.

For the past 6 years, I have made the March trip from New Hampshire to Daytona oddly on two wheels, and planned to do so again this year, leaving directly following a patient speaker conference I was attending in Boston. Once again, I was invited by Yamaha to display my motorcycle and share my story under their tent.

My good friend Scott was driving down to Daytona Beach and had agreed to take some of my stuff down in his car. I now sell T-shirts to help with my travel expenses and I wanted a few dozen available in Daytona so I dropped them and some extra clothes off at his house a few days before I left.

The conference was put on by a pharmaceutical company and although it involved compliance and skills training, it was a opportunity for the company to acknowledge and celebrate the important part patient speakers play in helping others cope with their Multiple Sclerosis Diagnosis and symptoms. For us peer speakers, it’s a chance to visit and hear each other’s story.

Between training and eating fabulous meals, I watched with increased intensity the snow and frigid temperatures that crept over New England. The conference ended Saturday afternoon, and as I was preparing my winter gear for the ride to Daytona, I realized my special and very favorite extreme cold weather long-johns were missing from my luggage. Clearly a brilliant move of mine to pack my thermal underwear in with the clothes I left at my friends house, now in the trunk of his car and 8 hours into his trip to Florida.

As I emerged from the $50 a night underground parking garage and crossed the iced cobblestone sidewalk onto the street, my bike’s thermometer read 11 degrees. I cranked up my heated jacket and gloves, pointed my head into the 40 mph wind and found my way to the highway. Despite wearing all three pairs of dress pants I had packed for the conference, my legs were still cold. The thought of trailering my bike certainly danced in my head.

I rode for eight toe numbing, nose dripping hours before reaching my brother’s house just outside Washington DC and calling it a day. It was 24 degrees when I left early the next day but I expected by mid-morning to catch up with Scott, and more importantly my long underwear. When I found my friend and his Toyota in the middle of North Carolina it was 32 degrees and snowing pretty hard. We had been communicating by phone and he took some photos of me as I passed him on the highway.

I took the next exit to get gas and somehow he didn’t. Getting gas was when I realized how cold and windy it really was, and I struggled to get my wet gloves back on my cold shaking hands. I returned to the highway and vowed I would catch up to him again and get my special thermals once and for all. After about an hour I called him again, wondering why I had not spotted him yet and was informed he had gotten sidetracked in search of a Starbucks. Unfortunately his app routed him to a coffee kiosk in a hospital. He wasn’t happy, but I had no sympathy, I was now almost 30 miles ahead of my underwear and was not about to stop or slow down for him to catch up. Besides, as I was almost into South Carolina and midday, I figured it would start to warm up soon.

I was wrong again! Passing through the famous South of the Border tourist trap, I could not help myself but to grab a couple of photos of the sign because it was plastered with snow!

I longed for my warm and cozy underwear for the next hundred miles, envying the growing number of bike hauling trailers I passed as the miles to my destination clicked away. It wasn’t until Georgia that the snow had stopped; transitioning into a beautiful freezing rain. My electric heated jacket was on high, and the slush that had built up on my windshield began to slide off and plop me square in the face shield. It was now 36 degrees, the wind had died down a bit and I was relieved. Half way through Georgia the sun came out and the temperature reached 50. I got gas, changed to my warm weather gloves and got myself a coffee, without using an app.

I wasted an hour before heading out once again, letting Scott get within a few miles of me.
For the first time since leaving Boston, I began to enjoy the trip. It didn’t last long. 30 miles from Daytona the sky turned gun metal grey and the loud ticks of rain drops began pelting my helmet shell. By the time I was corralled into the bike week traffic, I was riding in a full fledged typhoon.

Soaked to the bone, I dismounted the bike and tried to shake off the excess water before entering the lobby of my destination hotel. As I let out a long sigh of relief, a group of leathered bikers who were intensely watching the weather channel took notice. When the guy with snakeskin boots asked me where I had come from, I cracked a water wrinkled grin.

“New Hampshire.”“No,” He added, “I mean where did you leave your trailer?”

I instantly became damn proud of my puddle and my 1300 mile adventure getting to Daytona Bike Week.“Real bikers don’t trailer their motorcycles to bike week, we ride ‘em here, even from New Hampshire.”